Has anyone heard of this

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Volfan
Posts: 73
Joined: Sat Mar 11, 2017 7:58 am

Has anyone heard of this

Postby Volfan » Wed Sep 06, 2017 1:34 pm

I just had treatment 11 yesterday with pump disconnect tomorrow.
I saw the doc yesterday also. I mentioned that only one more treatment and oxi gets dropped.
At this point he told me we can keep going with the oxi after the 12th treatment if the neuropathy isn't bad.
I was under the impression from him and what I've read that 12 oxi treatments was max.
He did say if scan on the 25th shows improvement like the last I'll move to maintenance. The 5fu pill with avastin every 3 weeks.
Stage IV Rectal cancer with liver mets
Oxaliplatin, avastin, 5fu
48 yr dude

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Robino1
Posts: 463
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: Has anyone heard of this

Postby Robino1 » Wed Sep 06, 2017 1:38 pm

My insurance sent me a paper saying I was approved for 14 rounds of chemo. I haven't brought it up with my oncologist yet. I really should but keep forgetting.

I'll be sure to ask when I see her next. Might be a while though, 6 weeks.
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

rp1954
Posts: 1853
Joined: Mon Jun 13, 2011 1:13 am

Re: Has anyone heard of this

Postby rp1954 » Wed Sep 06, 2017 2:04 pm

The issue is what is your plan - are you going to try to achieve a durable NED through surgery(s) and chemo, some form of chemo forever, or whack a mole' episodes of treatments ?

You either +- drift along with your oncologist's choices or you have to move purposefully to plot an escape orbit. Although there are a number of options, you won't be offered most of them, and will probably be resisted on any nonstandard versions, even if they offer better possibilities and net utilities. The earlier you start, the better your options.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements

Volfan
Posts: 73
Joined: Sat Mar 11, 2017 7:58 am

Re: Has anyone heard of this

Postby Volfan » Wed Sep 06, 2017 3:15 pm

rp1954 wrote:The issue is what is your plan - are you going to try to achieve a durable NED through surgery(s) and chemo, some form of chemo forever, or whack a mole' episodes of treatments ?

You either +- drift along with your oncologist's choices or you have to move purposefully to plot an escape orbit. Although there are a number of options, you won't be offered most of them, and will probably be resisted on any nonstandard versions, even if they offer better possibilities and net utilities. The earlier you start, the better your options.


My oncologist seems to be big on getting the cancer to chronic illness stage.
Which I'm ok with if that's the best option. But I called Vanderbilt today to setup a second opinion. I just want to make sure this is the best option available.

My biggest surprise was that he suggested I could keep doing oxi after 12 treatments. I thought it was a 12 max treatment.
Stage IV Rectal cancer with liver mets
Oxaliplatin, avastin, 5fu
48 yr dude

rp1954
Posts: 1853
Joined: Mon Jun 13, 2011 1:13 am

Re: Has anyone heard of this

Postby rp1954 » Thu Sep 07, 2017 7:08 am

Your oncologist probably views this in terms of 5FU, Folfox, Folfiri, Folfoxiri, or their xeloda versions being the primary standard chemo backbones available for stage IV (there's also irinotecan without 5FU), and trying to get the maximum effect within 2-3 of those choices.

Oxi- tolerance is a spectrum. A lot of patients experience too many side effects or their onset, around 8-10 rounds, and are vexed by the neuropathy that often continues to develop even after stopping oxi-. Some patients blow out in 1-2 rounds, some have made it to about 16 total (not necessarily serially) and one that I vaguely recall had over 20.

Oxi- is reputed in some papers to kill some kinds of Kras mutant cells (+- CA199 biomarkers trending up, over ca 25 if without inflammation or organ damage doubling/tripling it). Say the oxi- benefit is 16 x 3 weeks + 3 months, that's 14 months, typically with neuropathies, liver damage, CBC/bone marrow damage, or some continuing combination at the end of oxi- administration.

We've managed to keep CEA/CA19-9 at bay without oxi- and its problems for ca 87 months of (immuno)chemo. It's not just how many opinions you get, it's how many and what kind of options you get. I pay for options and avoid repeats.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements

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BeansMama
Posts: 959
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: Has anyone heard of this

Postby BeansMama » Thu Sep 07, 2017 7:58 am

I had 17 treatments with oxi with folfox and then 5 more later with folfirinox. I didn't have a choice though, we were throwing everything at it that we could because my tumor was aggressive and chemo resistant. My onc did say I had reached maximum toxicity with the oxi after the 17 rounds but I did have a 6 month break while we tried folfiri between the two treatment regimens.
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

Basil
Posts: 275
Joined: Thu Mar 16, 2017 12:33 pm

Re: Has anyone heard of this

Postby Basil » Thu Sep 07, 2017 7:41 pm

I had neuropathy beginning round two with oxi. I'm over two months removed from my sixth round and have constant neuropathy is my feet and intermittent neuropathy in my hands. My onc said chances are it will go away in the next few months. The good news is the oxi did a hell of a job killing the cancer. No science to back this, but I tell myself the neuropathy was a sign that the oxi was really effective on me, killing or injuring whatever it found in its path, be that nerve endings or cancer cells.
40 y/o male (now 46), kids 11 & 14.
Dx 3/16/17, rectal cancer s3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED
1 year scans - clear
2 year scans - clear
3 year scans - clear
4 year scans - clear
5 year scans - clear (considered cured)

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susie0915
Posts: 945
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Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Has anyone heard of this

Postby susie0915 » Thu Sep 07, 2017 8:38 pm

I'm 17 months post adjuvant therapy. I still have neuropathy in my feet. No pain but annoying. As long as I have something on my feet it's fine. Tougher barefoot on hard floors. My oncologist says can take over two years to get better but may never totally go away. It is better. My hands are better i don't drop things and I don't lose my balance like I did. Weird thing is mine didn't even kick in until a month after I finished treatme nt. It hasnt prevented me from doing anything but is annoying.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

Achilles Torn
Posts: 141
Joined: Fri Dec 16, 2016 2:41 pm

Re: Has anyone heard of this

Postby Achilles Torn » Fri Sep 08, 2017 9:55 am

I believe The 12 Treatments of Oxi with FolFox is the old standard for adjuvant chemo after resection with curative intent, for stage 3's and resectable 4's. From speaking with my Onc It seems that if us stage 4's make it through 12 FolFox without progression (stability or reduction) there is no real standard treatment decision. Failure/Progression means they switch therapy to FolFiri and/or Eribitux but my cancer agency has no standard protocol for maintenance. Since I had neuropathy already in my hands and feet my Onc took me off Oxi for my maintenance chemo which is now 5fu/Leuv/Avastin. If I had not developed neuropathy we would likely have continued the Oxi for at least another few rounds which I would have done gladly as long as it continued to be effective. Chemo without Oxi is still no holiday but it is easier.

If you are seeking surgical resection I'd do everything to crush those mets down to where a surgeon will give it a go.

It's a tough decision as has been said since neuropathy can develop after Oxi stops.

Hope that helps
AT
Diagnosed as 40 yo Male. BC Canada. Sigmoid Colectomy Dec. 2016
Pathology T3N2bM1 19 of 24 Nodes Positive + tumour deposits
PET scan - Para-Aortic and Iliac Lymph node spread. Stage VI.
Moderately differentiated. MSS. KRAS/BRAF Wild.
Mutations: TP53, ERBB4, MLL3, PDCD1LG2, PRKDC, SMAD3
FOLFOX + Bevacizumab Commenced Jan 9/2017 PET Scan July 2017 - on maintenance 5FU/Bev every 2 weeks.
Progression after Covid19 induced break June 2020. Resume Maintenance chemo of Capecitabine and Bev

justin case
Posts: 4269
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: Has anyone heard of this

Postby justin case » Sat Sep 09, 2017 3:58 pm

Achilles Torn wrote:I believe The 12 Treatments of Oxi with FolFox is the old standard for adjuvant chemo after resection with curative intent, for stage 3's and resectable 4's. From speaking with my Onc It seems that if us stage 4's make it through 12 FolFox without progression (stability or reduction) there is no real standard treatment decision. Failure/Progression means they switch therapy to FolFiri and/or Eribitux but my cancer agency has no standard protocol for maintenance. Since I had neuropathy already in my hands and feet my Onc took me off Oxi for my maintenance chemo which is now 5fu/Leuv/Avastin. If I had not developed neuropathy we would likely have continued the Oxi for at least another few rounds which I would have done gladly as long as it continued to be effective. Chemo without Oxi is still no holiday but it is easier.

If you are seeking surgical resection I'd do everything to crush those mets down to where a surgeon will give it a go.

It's a tough decision as has been said since neuropathy can develop after Oxi stops.

Hope that helps
AT

I was never stage 4,although Oxi gave me no problems through 9 rounds, with 5FU. I had it during radiation, and I'm glad that is over with. As I'm only in your shoes because Oxy didn't bother me much, as has been said check to see if it doing you any good, and get a second opinion.
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

Faithandpeace
Posts: 22
Joined: Thu Aug 17, 2017 12:25 pm
Location: California

Re: Has anyone heard of this

Postby Faithandpeace » Mon Sep 25, 2017 6:19 pm

[/quote]We've managed to keep CEA/CA19-9 at bay without oxi- and its problems for ca 87 months of (immuno)chemo. It's not just how many opinions you get, it's how many and what kind of options you get. I pay for options and avoid repeats.[/quote]

rp1954, can you please explain what "immuno chemo" is? It seems to be working well for your wife. Does your wife receive treatment in the US? I appreciate any information you can give me.
DH dx 12/16, age 56, stage IV, mets to liver and lungs
5 tx Folfox + Avastin + clinical trial, 1/17-3/17, good results
Immunotherapy in Germany + 3 TACE, 2 TPCE (3/17-6/17)
Folfox + Avastin 8/17, 4 tx
10/17 xeloda + Avastin
12/17 PET negative in liver and lungs. Primary tumor thriving
1/6/18 LAR, temp loop ileostomy, horrible complications, 10 weeks in hospital, still recovering, 4/18.
4/30/18: Y90 to left lobe of liver
6/18: ablations to liver + lung mets


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